In Grace's Honor
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This piece originally appeared on Huffington Post. - Trish
My mother, Bea Lerner, was a powerhouse. Politics was her passion. Back in 1960, John F. Kennedy credited her with winning New Jersey -- a pivotal state -- for his election. As a result, she earned a spot on Nixon's infamous "Enemies List." She wore this badge proudly. In 1987 my mom was diagnosed with Alzheimer's. I was sure she could beat it. After all, she won every battle she ever fought...but she was no match for Alzheimer's. No one is. In 1992, this valiant lioness of a woman finally disappeared into the unforgiving chasm of Alzheimer's.
But I couldn't let this disease have the final word. So I wrote a play called "Surviving Grace" about a mother and her sitcom writer daughter's ordeal (a polite word) with Alzheimer's. Much like our personal battle, Grace is caught in Alzheimer's inescapable web. And much like our relationship, my play is laced with humor because that's how we got through life.
The play was staged at The Kennedy Center, Off-Broadway, and in theaters throughout the country, Brazil and England. Nowadays, we produce readings of Act I around the country sponsored by our organization, UsAgainstAlzheimer's. The cast has included NPR's Diane Rehm, Carol Burnett, Marilu Henner, Lonnie Anderson, Elliott Gould, Helen Reddy and Lou Gossett, Jr. From the political world we've had Massachusetts Senator Ed Markey, Ambassador Swanee Hunt, and North Carolina Governor Pat McCrory. And even Alzheimer's researchers have gotten in on the act. Noted neurologist Dr. Reisa Sperling, of Harvard and Brigham and Women's Hospital, recently played the part of the Diva at the Kennedy Library. All of these performances are done gratis because the performers, like us, are at war with Alzheimer's and have joined our fight to raise awareness and funding for research.
Whenever the play is staged I get to see my mom again. She comes alive. I guess I just can't let go of her. After all, it's only been 23 years. I hear her words, her irony, her spirit, her confusion. I hear my laughter and wipe my tears. It never fails. She--we--suffered through this merciless disease for five years, and though by the time she died it was time--she was but a shell of the mother I loved-- it was a premature death. I miss her every day. And she is still in my dreams three times a week telling me not to wear horizontal strips because they accentuate my hips (sigh) and still telling me she loves me.
So now I have taken up the battle to stop this cruel, relentless killer. It has become my life's work. I am tenacious -- a trait I inherited.
If only my mom had been diagnosed now when there is hope--and real medical possibility on the horizon. However, the National Institutes of Health currently commits less than $600 million annually to Alzheimer's research. Compare that with other major diseases: HIV/AIDS - $3 billion; heart disease and stroke - $3 billion; cancer - $6 billion. Researchers say we need $2 billion in annual NIH research funding to end Alzheimer's by 2025. And this is where I call on you because, unlike many other diseases, the sufferer has no voice. We are their voice.
This is a critical time in our battle. Earlier this year, a key Congressional committee recommended increasing NIH funding for Alzheimer's by $350 million in the new fiscal year. SOS: write and call your members of Congress and ask--make that demand--at least $350 million more for Alzheimer's research funding in Fiscal Year 2016. In DC numbers count! And to the caretakers - with the strength you have left, please join this effort.
Today as I write, a cure for Alzheimer's is a fantasy, a wish, an impossible dream. The same words that were said to Galileo, Edison, Einstein, Salk and whoever dreamed up the internet. Yesterday's dream is today's reality.
I think my mom would be proud.